amexdm
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10 GoodAbout amexdm
- Birthday 11/11/1964
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Two weeks Cured and then BAM
amexdm replied to amexdm's topic in Subarachnoid Haemorrhage Discussion
Hello all: A common thread lol. I feel and look eighty too. Bags under my eyes have bags. I get better looking as the day goes on though. I'm sure glad you found us Jessica. Did you just find us recently? Daff-Knew you would chime in. Sounds if you are on the boom and bust train like some of us. I don't feel so alone now. I wouldnt even mention it normally but this was a huge BAM for me this week, more severe than others. I know those adrenaline rushes just knock us out though. BUT, your brochure says we will have normal life expectancy so that is a big positive. We just have to get better now. Oops Sandi popped in. Yes, the only good thing Sandy Is I've learned to not overdo it on my "good" days! JH- not sure what you mean by soda bubbles. I get tinglining in my brain. Usually on the top of my head. To give you an example of my wonderful neuro, I told her that I had tiningling in my brain. She wrote down tingling in the SCALP and moved on. I'm not talkin bout dandruff Doc, I said tingling in my BRAIN. It is supposed to be normal though yay, I get it when tired, which lately is every day. David -
Two weeks Cured and then BAM
amexdm replied to amexdm's topic in Subarachnoid Haemorrhage Discussion
Hello, Well Jess I dont think you threw a pity party, although I might have. And I appreciate your support. Trust me i am the most positive person in the world. But you hit the nail on the head that our expectations are too high. Although i was told i would make a "complete" recovery and would be "fine" in a month. My expectations are now lowered of course due to reality. But at setback number 50, how much reslieincy does one have? Good question, my wife has been super supportive and does everything for me as far as cooking, cleaning, house stuff. I have severe headaches still so she sees me in terrible pain. She has had her moments also but I cant blame her. But if I am not well enough to enjoy two hours of golf on a sunny day then it makes me wonder. Mary and I are at two years and similar places. All being said, hopefully having these past good days are a sign of improvment right. It just that we want it sooner than it has come. David -
Two weeks Cured and then BAM
amexdm replied to amexdm's topic in Subarachnoid Haemorrhage Discussion
Hello: Well I am thankful to have had two good weeks but thats all I get? JH- I had a SAH with no known cause. No surgery. Off work for two months. Came back way to soon and have been climbing the uphill mountain ever since. You are so right that it's the out of the blue stuff that knocks me out. Such as my co-worker missing two days. These things we cant predict. But there always be something. I cannot cook a meal after a work day. I can barely do laundry. Am I asking too much? Thanks. David -
Life forever changed or does it get better?
amexdm replied to jhelms's topic in Subarachnoid Haemorrhage Discussion
Hi Jessica, Everthing you feel is normal. I think we want our old happy back and there is nothing wrong with that (see my recent Two weeks cured thread). I am feeling the same way at the moment. I cant imagine what you went thru with your angio and the 10 tries. That is awful and humiliating. i understand your fear of doctors, I really do. When I had my SAH in the hospital, it took them 5 tries to get my catharter in. The last try was a Resident who shoved it in me and said "There, done" and walked away leaving me naked and alone. She was like angry. I didnt ask for the damn catharter!. My wife was outside the curtain and saw it all. So i know what you mean. If you have PTSD, you should try to see a therapist. It is very difficult to tackle on your own. If you could meet with a therapist who specializes in brain injuries I think it would help. They want me to go but I cant take time off work right now. If I go, I will let you know how it goes. I have fought and fought for two years and you what, it gets tiring. So use all the help you can. Here for ya. David -
Hello all, I think I remembered GG writing a similar thread a while back about having two good weeks and then back to SAH misery. Well, it happened again. In the beginning of August I had a great two week stretch of 11 out of 14 days. 11 Good days. Little pain, little fatigue. And then it came back again. Out of nowhere, just like the "cure" did. I am back to severe headaches and leg pain and fatigue. I literally CRAWL out of bed to get up to go to work. To get out of my car, I have to pull myself up with the door to have enough strength. I did not think I was cured but was hopeful of progress. I spent the weekend in bed. Last Thursday and Friday, my co-worker called in sick with a headache. I had to do all the work of two people. Absolutely shattered my body. There have been some incredibly beautiful days last week. 73 and sunny, not a cloud in the sky. And I was in bed. I would have liked to have sat outside or played golf. Golf is not that strenuous. I made the executive decision that my rest and body were more important than being outside. But you know what. It sucked. This not me. If it were not for my wife, I would give up work and be disabled. Because I AM disabled. I am trying to provide a life for her and I and a future. I could make it on my own. I started taking Inderal/Propanol for blood pressure. It helped for a while. But I gained like 10 pounds immediately. It's ridiculous. I eat hardly nothing. When I have to take pain meds when the pain gets so bad I could scream, it screws up my breathing so I feel like I'm having a heart attack. So I got that going for me. I am a fighter and will keep fighting. I know others have it worse than me.I know this will pass and I will improve. But improve to what level??? I know this is just a setback but after setback now #50 I'm a little sick of it. Just a rant and thanks for listening. Has anyone else had a good stretch only to be kicked in the teeth and had thier legs cut out? David
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Life forever changed or does it get better?
amexdm replied to jhelms's topic in Subarachnoid Haemorrhage Discussion
Hello, Jesssica you have been through alot. I am in the US also and can empathize with your problems with the neuro doctors. They dont know what to do with us. I also suffer from PTSD and find it hard to accept the new normal. The best thing to do is talk it out and people here will listen. I used to be the life of the party also but spent last weekend in bed. You are not alone in this, we have all felt that way. Tou can PM anytime if you need to vent. David -
Useful patient literature about SAH
amexdm replied to Daffodil's topic in Subarachnoid Haemorrhage Discussion
Hi Daff, Thanks for sharing. The beginning part was kind of reliving and scary. But the rest was great. I particulary liked the recovery part and the great life expectancy. My wife will be mad about the alcohol part. Thanks. David -
Hello all: Hi Julie, hope you are sleeping better. Sleep is so important post SAH. We need to recharge our batteries right? Try a fan away from your bed and eventually you get used to the noise. It works for many. Right after SAH, I slept 16 hours a day. Must have been part dog. But it was better than the pain. But your patterns will get better over time. My problems is nightmares which is a whole nother issue which just knocks the daylights out of you. I need a sleep doctor! Maybe we all do. David
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Hello all: Yes, Sandy a very valuable thread. Sarah it is often ok to try and test ourselves and our limits. Otherwise we will never know. I hope you are feeling better and work out that head. By no means should you be dissapointed in yourself. You are strong and do fantastic. I think Mary and I are very close in our recovery stages. I am just past two years and had 11 out of 14 good days. It was nice for a while. This week it's back to feeling the wall of fatigue again. But progress is being made. Sleep is a huge factor for me. One bad night and I'm off kilter for 3-4 days. Hope all are well, David
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Hi Win, Tell your brother to keep it down, you have a brain injury! Noise is a bummer but not as bad as it was initially. I can't talk on the phone for very long either, neck and headache. Hope your shunt is ok pal. I got brave yesterday and decided to listen to music on my iPhone headphones. Bad idea. gave me a headache. I will say the noise issue has gotten better over time, relatively speaking David
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Hello SL, Well done on three years on. You are a great fighter and inspiration to all of us. I have learned so much from you and all on this site. Drink water right? I am glad you have your daughter to share it with and i know she brings you much joy. I hope you continue to improve and wish you good health. Best of health, David
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Hello all: Hi all BTG Back to Work people. Been a couple weeks since this has been updated. A special welcome to some new workers here. We are all in this together. I am back at 40 hours. I was working 35 in July. The little break did help me. This is my last chance. Sink or swim. I do wish sometimes I could channel my inner hippie and drive around in a VW bus. I have mastered Pacing. Go to Work. Come home lay in bed. Rest. Go Back to work. I am able to go out to dinner with my wife on Saturdays. I am thankful for that. Positive right? Headaches are better though. woo hoo. Mr. Fatigue beats me every day though. Some days ok, others not so much. But, I think I'm gonna make it. I have BP meds that should keep my BP at a safe level. Otherwise rest and water. Iola- Welcome and please join us. I live in US also and do similar type work. Let me know if you need any help.tips. Take it slow and drink lots of water. You may find a little normal back. Wem- I have followed your posts but too tired to respond. I feel your pain and feel the fatigue. Glad We're not alone. Sandy-Good job on volunteering Gill- Glad to see you volunteer work went well. I know you've been trying for a while. And you made Nate's concert thats awesome Sarah lou- Enjoy your time off. Hope everyone is well. David
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Hello all, Congrats on the volunteering Kris, hope it works out for you and all others who do this. You all know my volunteering attempt was a disaster with the Hospice group so I volunteer right now to try and take better care of myself. That darn Mary is right again. I would PAY to see Win sing at an OAP home casue that would be fun. Sorry to all if I havent been so supportive lately but must keep myself alive first. Good day all, David
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Hello, Wow, Daff great article, How do you find this stuff? Well yes this article totally applied to me. I wish this lady was my doctor! My doctor says "You have to have a job" While my job has hurt me physically, its more due to the hours than stress. I love my job. I can do it in my sleep as far as knowing it. I get to help people save for their retirement. I send out checks for thousands and millions of dollars. I love the people I work with. But there are some inevitable fight or flight situations that are going to happen that cause stress like the article said. These build up over time. So we have to do the things that relax us and hopefully those outweigh the stressors. I do alot of those things already. Probably not enough. My company has worked with me for two years with this SAH. I think I have managed my return brilliantly. But maybe in their mind two years is enough to help someone. But now I worked myself too hard in to a TIA and I will stand up for my rights as a disabled worker. Sadly, if I quit or lose my job there are 50 people in line waiting to take it and push me out. SL- I love your honesty and you've been there since day 1, thank you. Maybe I havent accepted my SAH yet. But I dont want to go on disability to find out. Daff- Buy you a coffee for finding this article. Win- You didnt say anything wrong, no worries. I have had some huge support from this great group at BTG and I hope I still have it because I'm gonna need it in the next few weeks. Take care all, David
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What have you managed to achieve today?
amexdm replied to Karen's topic in Subarachnoid Haemorrhage Discussion
Hello, I worked today and was able to somehow survive the day when the air conditioning was out. It was 93 and the air was out at work but I stayed and didnt complain. Drank lots of cold water and used my desk fan. My wife's bone cancer test came out negative which is a huge relief for us. D-
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